Postnatal Depression: Finding Someone Who 'Gets
It'

By Alison McCulloch

If the public health system can only
help ‘the tip of the iceberg’ when it comes to
post-natal depression, where are all the other women
going?

As reported in 'But I'm
Not Depressed', many will never get help, but for those
who do reach out, what they get will depend on where they
live and whether or not there’s a champion in their
community.

In Nelson and Wellington, for example, it’s
the voluntary sector that’s providing much of the
front-line care for women not deemed ill enough for
specialist services. While Nelson DHB says it doesn’t have
“the number of patients that would support having a
dedicated Maternal Mental Health service or team", around
100 women a year are being referred to the volunteer
Postnatal Depression Support Network. (That figure looks set
to rise this year, with the network already having received
93 referrals by early September.) And with nearly 1,500
births last year in the region, there are likely several
hundred women facing post-natal mental health
problems.

Asked where women with PND would go, the DHB
pointed to its mental health and addiction services, and
also to the community support groups. The DHB does
contribute $335,000 a year to the South Island Regional
Mother & Baby Service, based in Christchurch, but that
service is for severe cases, and access may not be easy for
women who live outside the area.

Funding
Struggles

Anna
Hammond

Anna Hammond is the Coordinator of Postnatal
Depression Support Network Nelson says one-off DHB
funding the group received in 2014 was not renewed, which
put huge pressure on their finances. "We
had been paying counsellors to see our clients and had in
effect run out of money and nearly had to stop our service
to the community," Hammond said.

But, after some
media publicity, a one-time $5,000 donation saved the
network from closure. She says the lack of support from the
DHB was “really disappointing”, and it was getting
harder and harder for her network and the myriad other
non-profit groups like it to find the money to keep
going.

“Statistics show that we do save the DHB a lot of
money in that we see women for free, and we usually see them
at the start of their difficulties, and quite often getting
support at an early stage can stop things getting worse
later on, which is better for the mums,
babies, partners and other family members/whānau,”
Hammond said.

It costs around $60,000 a year to keep the
service going, covering 25 paid hours of work a week.
Everything else is done for free by volunteers.

Antoinette Ben

Meanwhile, in the
capital, the support network PND
Wellington faces similar issues. Antoinette Ben is the
convener of the group, which provides 800 hours of low-cost
or free counseling a year, a 7-day-a-week phone service, a
monitored closed Facebook page with more than 500 users, a
website and regular newsletter.

“We get no government
funding, but we are really relied on by a lot of government
agencies. So if you go to your GP, your GP is probably going
to refer you to us,” Ben said. “If you see your Plunket
nurse and she’s concerned about you, or your midwife or
social worker, we would be one of the first places they
suggest you use, so we’re relied on quite a bit, but we
have to take so much time to find out how we’re going to
get through the next six months.”

PND Wellington’s
budget is similar to the Nelson group’s at $60,000 a year,
which covers three part-time workers. Ben said the group
seeks money from the usual community funders, including
Lotteries, Community Organisation Grants Scheme (COGS) and
even gambling trusts. “It’s a constant taking of time
and mind, and we could be actually doing a lot more to
actually support mums with that time and
energy.”

People Who ‘Get It’

Besides
picking up patients the public system can’t or won’t
take, groups like Postnatal Support Network Nelson and PND
Wellington offer something the specialist services may not:
people who have been there, and “get it”. Sure, there
are the psychiatrists for severely ill women, the
counsellors attached to GP’s practices, the midwives and
Plunket nurses and iwi health providers. But if they
haven’t been to that dark place themselves, the help they
offer may not get through.

“If I didn’t know about
them,” January* said of her local PND support group, “I
don’t know where I would be actually." "It’s just a nice
feeling to be with people who understand and to be able to
put me in touch with specific post-natal depression
counsellors that has made the world of difference,” she
said. January* suffered silently with emotional ill-health
throughout her pregnancy and finally got help when her son
was 6 weeks old. She was first referred by her GP to a
counsellor whom she saw a couple of times then dropped.
“She was a nice lady but I didn’t feel like she had much
experience of PND, I didn’t feel like I would get anything
from it,” January* said. Others had similar
stories.

“If they hadn’t been there, I would have
felt very isolated and by myself and I would have thought
that I was the only one going through it,” February* said
of the support group she’s a part of. “Lots of people
now have coffee groups and stuff and a lot of those mothers,
while they might be feeling whatever they’re feeling and
having negative thoughts towards their child, the last thing
they’re going to say to their buddy at the coffee group
who is ranting about how their precious little one crawled
today … ‘you know what I had a crap day’ and the other
mothers go ‘Oh my god I know, my four year old was
throwing his toys and I can relate to that and I felt like
throwing toys at my four year old’”.

April*, too, says
her support group was a lifeline. “During my worst times,
knowing that I could put up this post in this group, and it
was safe and no one could see it but these ladies and there
was always someone there who would respond, that was a
lifeline, knowing that there were other mums who got
it.”

‘They Back Us Up’

Dr. Mark
Huthwaite, a perinatal psychiatrist in the Regional
Specialist Maternal Mental Health Service in Wellington,
says the publicly funded mental health services see just the
tip of the iceberg “because that’s who we are funded for
– moderate to severe – and I think the services that do
exist are actually really good.” The struggle, he says, is
to provide services for that much bigger group, the mothers
in the “mild to moderate” middle.

“They are in the
voluntary sector and they are doing such incredible work,”
he says of groups like PND Wellington, but with no funding
support. “They scrounge around, they go to Lotteries they
go to all these different places just to keep afloat, and
you’ve probably seen … how important they are. They back
us up.”

Karen Magrath, the national advisor for Plunket
Well Child and Parenting, agrees that for women with mild to
moderate PND, services vary, “so some areas have strong
resources, and others it’s almost entirely absent”.
Plunket enrolls about 91 percent of women in its Well Child
programme under contract with the Ministry of Health. But it
also provides a lot of extras – services in the community
from coffee groups to toy libraries to parent education and
support groups – for which it, too, has to go out and
raise money.

Interviews and information from DHBs (links to Excel
document) show it is indeed services for women who aren’t
considered severely ill that are the most patchy:
non-existent in some areas, unfunded and on the verge of
folding in others. But the landscape isn’t all bleak, with
a few DHBs actually taking on and funding community-based
NGO models.

For example, Magrath says Plunket has
contracts with several DHBs to provide postnatal adjustment
programmes to women with mild to moderate PND. "Those
services help more than 800 women a year, and the demand is
increasing," she said.

‘Flourishing
Families’

Tina
Berryman-Kamp

In an unassuming wooden house a few
blocks from Rotorua’s CBD, clinical psychologist Tina
Berryman-Kamp runs a DHB-supported service called
Flourishing Families, whose focus is perinatal mental
health. Berryman-Kamp moved to Rotorua in 2003 after working
in Maternal Mental Health services in Auckland to find Lakes
DHB had no specialist perinatal mental health team, and was
referring women to its adult mental health team which in
turn was accepting very few of them.

“I thought, this is
wrong, knowing the birthing population was around 1,000 per
annum: where are all these people?” She approached the DHB
about setting up a group in the community which, after a
successful pilot, has been funded ever since. The house came
a few years later, in 2014. “I think in Rotorua we are
very privileged, I’m not aware that there are other
services such as this elsewhere and that’s because Lakes
DHB have been prepared to fund this service,”
Berryman-Kamp said.

Nicola

Nicola is of the women
who’s been through Berryman-Kamp’s group programme, and
described the help she got there as “amazing”. Several
factors put her at risk of post-natal depression, including
past struggles with mental illness, living a long way from
her family and original home in England, and conceiving her
son through IVF after discovering, in her late 20s, she was
unlikely to get pregnant naturally. “All through my
previous experience with depression, [it was] medication,
medication, medication. This was actually looking at the
reasons I feel that way, what we can do about that, how we
can challenge it, how we can cope with it,” she said of
the help she got at Flourishing Families.

The particular
pressure of having had a baby through IVF was something
Nicola hadn’t expected. “I didn’t realise either, but
we’re a high risk group, because you spend so long trying
to get this baby, you are fully prepared, it wasn’t an
accident, you want this in your life, and then it comes and
– it’s not what you expected, and you struggle, and you
feel guilty because you wanted it so badly.”

Nicola
found her way to Berryman-Kamp after being first referred by
her GP to the pediatric mental health team because, she
said, it was Christmas. “They saw me, and I was a big
mess, and they were great, they just talked to me about what
I was feeling what I was going through. I cried my way
through it, and they assessed me and they said that Tina was
specifically for women just like me.”

Referrals on
the Rise

In the neighbouring Bay of Plenty DHB,
counselor Yvonne Thurston runs a Primary Health Organisation
(PHO)-funded PND support group set up about three years ago,
which can accommodate 6 to 8 women at a time for 8 free
two-hour sessions, which take place in Tauranga.

Thurston
says the numbers of women seeking help has risen, something
the numbers of referrals in the region back up. Figures
supplied by the Bay of Plenty DHB show that in just two
years there has been an almost four-fold increase in
referrals received by the area’s specialist maternal
mental health team, up from 77 in 2013 to 275 last year.
With that increase, has come a rise in the numbers declined
or referred elsewhere, up from 23 in 2013 to 47 last year.
With just under 3,000 births in the Bay of Plenty District
Health Board in 2015, as Thurston says, there are many more
out there needing help.

“We know for every thousand
births there’s going to be 10 percent to 20 percent of
them that are maybe going to need some support or benefit
from some support, so it’s often how to get people to
these things,” she said. “We know that the numbers are
out there, we’re not seeing them.”

Women are referred
to the PND group by GPs, Plunket nurses and by the
specialist Maternal Mental Health Team, although Thurston
said her group finds it tends to be the same GPs and Plunket
nurses that to do most of the referring. Which raises
questions about what’s going on with other maternity
carers. “I don’t know whether they’re still not asking
the questions,” she said. “I know women can find it
difficult to be open about these things, for example women
who have high expectations of themselves and see it as a
failure if they're struggling.”

More Training
Needed

Berryman-Kamp says a lot more work needs to
be done with women while they’re still pregnant. “We
know that the information that’s going out ante-natally is
not ideal, it’s very patchy. I think midwives need a lot
more training around perinatal mental health, and to see
that the holistic health of their clients is really
important simply because they’ve such a working
relationship with those women,” she said.

One survey
suggests midwives themselves would like more help. Asked in
the 2010-11 maternal mental health services
survey if they had received “any training to ask
questions about personal mental health history”, 55
percent of respondents (most of them midwives) answered
‘No’, and more than 80 percent felt they would benefit
from more.

Alison Eddy of the New Zealand College of
Midwives said maternal mental health was a component in
midwifery education and included in ongoing education for
midwives. Like Plunket nurses, midwives use the PHQ-3, but Eddy says even if a mental
health issue is suspected, it can be difficult to find the
right services, with some women reluctant to go to their GP
for a variety of reasons, including cost, embarrassment or
the fact that they don’t have a good GP
relationship.

Berryman-Kamp sees more open discussion as
crucial, but agrees embarrassment and stigma is a barrier,
“the fear of, if I talk about it, ‘will people take my
child if they know what’s going on for me, will they think
I’m a bad parent?’”.

“We know that many many
parents will experience scary thoughts, that doesn’t mean
they’re going to do anything to their children, but those
thoughts are common. No one is typically talking about that
stuff because they’re terrified what’s going to happen
with it.”

Coping with the Stigma

Stigma came
up again and again in interviews with women dealing with
postnatal depression – talk of which, as Berryman-Kamp
noted, quickly turned to a fear that if they told the truth
about what they were going through, and “got into the
system”, they might lose their children. And given the
media focus on New Zealand’s rate of child abuse, those
fears are not without foundation. Even though studies show
intrusive scary thoughts are both extremely common but
rarely acted upon, what mother is going to own up to
them?

Ferguson is still haunted by what happened to one of
his patients, a story he tells in his NZ Doctor article, of a woman who lost
custody of her children because of an episode of drug taking
while she was ill with PND. “The Family Court judge did
not accept evidence she had been suffering from an illness
and had recovered from it, and she lost custody of her child
to the paternal grandparents,” he wrote. In an interview
in July, he said the woman’s case wasn’t an isolated
occurrence, and there was a lot of prejudice in the courts
and Child Youth and Family around maternal mental
health.

“We’ve seen it,” he said of himself and his
practice colleagues. “It’s driven us to tears,
literally. The only things that have driven me to tears in
my life in general practice have been incidents with mothers
with CYFs which have been completely inappropriate
interventions.”

February* had a history of mental
illness, and some years ago was diagnosed with OCD and an
anxiety disorder, and intrusive thoughts are a particularly
frightening aspect of her illness, something several of the
women interviewed for this series also reported.

“There’s lots of forms of OCD,” February
says, “and unfortunately with mine, it’s more about
intrusive thoughts and they’re full on intrusive thoughts:
it can be being sexually inappropriate with your own
children right through to getting a knife and stabbing your
partner. It doesn’t mean you’re going to do it, or act
on it, but it’s just that these thoughts are so alarming
to you that your brain obsesses on that
thought.”

February* said that for years, she thought she
should be “locked up” because of her thoughts. She got
herself well with a combination of medication and cognitive
behaviour therapy (CBT), but realised when she was pregnant
with her first child and felt her anxiety begin to rise,
that she needed help.

“I was incredibly anxious about
getting those unpleasant thoughts, because it’s your son
… and that’s when I became involved with the mental
health team because I’d done CBT before but when I had
him, I felt like it was new situation, there was this new
child coming into my life, what was I going to do? Was I
going to have these unpleasant thoughts? Was I going to act
on them? And you kind of freak out a bit.”

“It can be
very debilitating, and some people do kill themselves over
it because they can’t get out of that trap, because they
don’t get the right help, because it’s not something you
want to talk about with your friend, those sorts of things,
it’s very taboo in society.”

Across All
Cultures

Mental illness is stimatised across the board,
but idealised notions of motherhood, and moral panics about
child welfare can make maternal mental illness particularly
fraught. And that can go double in more traditional
societies, a point Auckland psychiatrist and maternal mental
health specialist Dr. Sara Weeks makes in her 2013 book
about post-natal depression “Mothers Cry Too”. She points out that
postnatal depression is present in all cultures – at least
all that have been studied (there are even references to it
in ancient Greece) – even if descriptions and labels
vary.

“Being diagnosed with a condition such as
failelagau (literally ‘broken new mother’ in
the Samoan language) will get you bed rest and support from
traditional healers and family,” she wrote. “In Korea,
sanhupung (disorder after childbirth) involves pain
in the joints and muscles, fatigue, sleep problems,
dizziness and anxiety, whereas hwabyung (anger
disorder) causes headaches, palpitations and chest
pain.”

In a series of lectures on the topic (available
online) in 2014, she looked at Pacific mothers, noting
that rates of PND were “alarmingly high” among some
groups. "The sad thing is that looking at the numbers of
pacific women in the Auckland District Health Boards’
Maternal Mental Health, there’s very few indeed have
presented to them or been taken up by them, whereas we’re
looking at about double the rates for mainstream so what are
happening to these women,” she said in one of the
lectures. (Figures from two of area’s main DHBs, Auckland
and Counties Manukau, show women classified as “Pacific”
comprised 17 percent and 9 percent respectively of those
seen by maternal mental health teams. The DHBs respective
Pacific populations are 21 percent and 11
percent.)

Jacinta Fa’alili-Fidow, until recently a
manager at TAHA, a Pacific-focused child and maternal
health service, has concerns about ethnicity being
singled out as a risk factor for PND and says there are
limitations to research which often can’t capture “the
lived realities of people…especially when it comes to the
roles and responsibilities of Pacific women”. “Some of
our migrant mothers have lower rates of depression compared
to New Zealand born,” she says. “There’s something
there that we’re just not capturing.”

However she,
too, acknowledges stigma is an issue, particularly around
services. “Those services are available and they’re
great, but we have the issue of women or Pacific people who
are afraid of going to a Pacific service for fear that they
will be identified,” she says. “They will know someone,
or they will know their parent, so it is important that we
provide a service where someone can go and feel anonymous
and unidentified.”

Other articles in this
series:

Articles in this
series were supported by a grant from the Scoop
Foundation for Public Interest
Journalism.

This investigative journalism
project by Alison McCulloch was funded entirely by member
donations to the Scoop Foundation for Public Interest
Journalism. If you want to see more quality public interest
journalism like this please donate to, or become a member of, the Scoop Foundation
here.

The Foundation is currently running a membership drive for October and has some great rewards on offer including a multi-author book on the future of journalism in New Zealand.

Alison McCulloch will be interviewed by Kim
Hill on Kim’s RNZ Saturday morning show at 9.05am on 22nd
October, and that interview will be subsequently available
on the RNZ website.

Alison McCulloch is a writer and freelance journalist. She has worked at newspapers in New Zealand and the United States, including seven years as a staff editor at The New York Times. She is the author of "Fighting to Choose: The Abortion Rights Struggle in New Zealand" (Victoria University Press, 2013).

Contact Alison McCulloch

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